Hallo all
Today, on a Teams meeting, I became very distracted by the small tomato in the bottom right corner of my screen š Especially when I realised it was me š” Iāve had problems with Rosacea for about 6 years or so but then it abated a bit. Now it seems to be back with a vengeance and Iām getting the powerful hot face flush thing quite a lot. Could be a coincidence - or could be the Levo...? š„µ
Anyone else experienced this?
Thank you
Which type? I have Pilaris Rosacea, but I am under Dermatology also for another skin condition thatās flared over the last year. Iām West Indian so it doesnāt show as much. But my cheeks are continuously flushed! Itās all aesthetics to me. The bodyās way of warning is there may be something wrong. You have a diagnosis. Have you changed your Levo type?
Hi EbonyEvans I have several types - canāt remember the names but I have the tiny vein thing, the hot red flushing thing, the spots on my nose thing. The flushes increase the amount of veins left. Iām on Teva and Wockhart now - was on Teva only. Do you get the hot ārushā feeling in your face?
I used to have it, really bad! I saw quite a few different dermatologists and they tried several different treatments - including antibiotics - but nothing helped. Then I started levo and it cleared up immediately - one symptom of hypo that did get better with levo! 
Red Butterfly rash common with Hashimotoās
Should improve as dose levothyroxine is increased
Is that what it is? About 4 years ago my face started to get red in the front and three years ago I started to get a rash on my forehead that comes and goes. I noticed from my labs it correlates with a drop in my T4/T3 levels. Dermatologists had no clue.
I was diagnosed with Rosacea not long after being diagnosed with Hashimotos and put on Levothyroxine. I was prescribed a erythromycin medication for 11 years for Rosacea, which I had no idea is an antibiotic Iām embarrassed to say. I just took a tablet each day stupidly. My skin use to flare up all the time especially on my forehead and chin. I was also diagnosed as a poor converter of Levothyroxine to active T3 recently. After months of being very ill, I went private and was prescribed T3 medication along with Levothyroxine. Since starting T3 I have no skin issues whatsoever. All my terrible symptoms have gone and Iāve lost 4st too.
Iām convinced my skin issue was to do with my thyroid levels being hypo for over a decade. Looking back at my NHS record now I know what my levels should be and understanding the thyroid much more, my TSH was never below 3.0 meaning I was under medicated for more than a decade, as it should be under 2.5. The magic element for me has been T3. I have Hashimotos and I am DIO2 gene tested as positive, meaning I need to be on combined thyroid medication T4 plus T3.
Have you had your conversion checked at all. Optimal thyroid is the only way.
McPammy, how difficult or easy was it for you to obtain the DIO2 genetic test? I, too, cannot use T4 only replacement. Even synthetic T3 did not increase my FT3. I must use desiccated THR. Would be beneficial to have this stated in my chart.
It was really easy to get my DIO2 gene tested through Regenerus Laboratories as promoted on here. They send you a kit. You give them saliva and post it to them. Mine took 3 weeks to be confirmed. I chose the option for a professional to call me to interpret the findings which is a little more cost. I paid Ā£165 in total. It was really worth it as now this report has been scanned on my NHS file also.
Very many of us who test positive for Dio2 have found it very helpful test to argue for T3 prescribed on NHS
It doesnāt mean you canāt convert. It means brain in particular needs stead supply of Ft3.
Thank you McPammy . Iāve had Rosacea for years. Also was prescribed antibiotics but stopped taking them due to concern that theyāre antibiotics- and also because GP wasnāt even sure they would work (they didnāt). Only quite recently diagnosed Hashis but looking back think Iāve had it for quite a while. Really, really struggling at the moment with the flushing and wondered if itās the Levo āheating me upā or something? Waiting for next results - still being titrated. Havenāt had conversion checked... thank you though, interesting to know T3 was helpful for you š
My Rosecea started with the flushing but quickly moved into the thickening skin which was actually painful. Then developed blepharitis which the eye consultant told me was related to the rosacea. Donāt take Levo so canāt comment on that but some things that have reduced the rosacea to almost unnoticeable are cleaning my face with LāOreal miscellar gel ( this one as thereās no alcohol in it) Wearing total sunblock on my face from first sun of Spring onwards ( no suntan for me ā¹ļø) and cutting out gluten.
Itās a horrible skin condition, made me feel very miserable, so push to see a dermatologist who can pinpoint the type of rosacea you have.
Hi thank you. Yes I know itās so miserable this thing isnāt it? Iāve seen a consultant. Saved up Ā£250 to see a man who just told me off for not taking antibiotics every day because I refused to do so. My skin has thickened on my chin and nose now. I use Eucerin Urea 5% which my skin can absorb even during the hot painful dry flush. Mainly have the flush and veins and some spots. Lovely. Have you tried IPL? I had that a few times...good but expensive. But no more expensive than seeing a disinterested consultant...!
A friend who suffers from rosacea quite badly found the anti inflammatory properties of eating avocado's helped a lot.
Thank you - Iām upping my avocado consumption to daily now!!
Thankyou for bringing this up! I couldn't figure out why out of nowhere I had rosacea. I'm not on anything yet because I cant get anyone to take me serious, even with high levels of thyroid peroxidase antibodies. But I have found cutting out gluten, tomatoes, citrus, cinnamon, even onion, garlic has calmed it down. I've also found using avene tolerance skin care is the only thing for me thats not making it worse. I have the pustles, red, itchy type of rosacea. I'm almost relieved to know theres a link of rosacea to hashimoto's because I was so confused why all this skin trouble! I hope so much you get sorted, I understand how painful and limiting diet wise it is!
Hi Kaju mine got worse just as I hit menopause so that might have been my trigger not sure if youāre there yet?. Iāve tried many things - main diet no no now is any chilli or hot spices. That results in days worth of red!! Eucerin 5% urea tolerated and absorbed even during those times when skin gets dry and tight. IPL did get rid of the spider lines for about a season - they came back but it did provide some relief. Oh yes just remembered took beta blockers for a while ad hoc - I have stress as a trigger. Also heat/changes in temperature and holding my breath...which I do unconsciously when Iām concentrating!
Hi, do you find grains affect it? I'm 34, I'm yet to have hashimoto confirmed. But my triggers seem to be much like yours. Stress, heat, chilli, ginger etc etc but I cut out all obvious and I'm having the pustle flare again so I wonder if theres something else, grains or nuts? Or seeds? I do have oats, and wheat free gluten free alternatives so wondered if they have an influence. Pumpkin seeds I eat too? Or black pepper possibly? That's the only seasoning I'm using at the moment, but maybe that's in the same family as chilli etc? I have read rosacea will come and go, just trying to understand triggers that flare it. Such a pain right x
It is a pain! But good youāve identified it early - I didnāt, I just ignored it. Do you have the thread veins? I avoid all gluten which I think helps. I eat seeds and unsalted nuts and avoid sugar and carbs (sugar causes rushes). I donāt have milk but do have cheese. I have started eating blueberries daily (if you get the frozen type not to expensive) because theyāre meant to be good anti-inflammatory food. I think one trigger is psychological - the stress of having a flare up causes a flare up. The beta blockers help (when Iām teaching) but I wouldnāt want to get too dependent on them. If you have any thread veins start treating them now. Donāt wait like I did x
Sounds diet wise I'm trying what you are. Good to know that blueberries are good for that, I've actually been having more lately. I'll eat even more! I do have thread veins, not too bad yet, I seem to have alot on mine shoulders dont know if that's related. I didnt realise you can get them treated? Is that through a dermatologist?
Hi Kaju20 the thread veins may spread - not always, but mine did. The more they spread then the more red you get with the other issues too. The only treatment that I think works is IPL which is intensive pulse light therapy (or something like that). Basically it zaps the veins and they disappear. I have so many now because I left it that it could take a day to do mine!! I think lazer treatment works too but Iāve not had that done. When Iāve had IPL my skin settles down well. Have a google and see what you think? Oh the other thing I was thinking is that dry heat is bad so central heating is flarey. If you have radiators put something damp on them when theyāre on to get moisture in the air š
Thanks so much, they're all very useful tips. Things I did actually wonder about, I was starting to feel a connection with the heating, as I sleep right next to the radiator, maybe time to swap sides. It's a good idea, maybe when it seems to have calmed down I'll look into the IPL. Thankyou so much for your help, really appreciate it
Hi Josephine, i am wondering if you have any other issues such as GERD, IBS, IBD, Crohnās? Sometimes asthma, too. A more telltale sign is extreme flush that can be mistaken for rosacea, frequent diarrhea (some serious constipation), very elevated or very low heart rate and blood pressure. Not as rare as a few years ago, people with this conditions can be misdiagnosed. In reality, they suffer from neuroendocrine issues (NETs) that are carcinoid cancer. Not sure if i can share the link for this disease so feel free to message me. There is very specific blood tests and scans that can help identify NETs.
Yes, i am a patient/survivor that had papillary thyroid cancer. After the PTC, i underwent a colonoscopy and EGD as a preventive procedures at age 51 (in 2012). Never had any symptoms but during the EGD they found a 2mm NET in my duodenal bulb.
Hi Celestialbeing I have had IBS all my life but it runs in the family. GERD now and again (also runs in family). No asthma though. This is definitely Rosacea but thank you for the heads up as itās something to be mindful of. Iām sorry you had this and hope youāre better now?
I have Rosacea and itās only since last year it has become quite prominent after my levo was droppedhad gastroenteritis for three weeks the year before very low vit D and folate
It can be a sign of SIBO small intestinal bacterial over growth.Can be treated naturally with a diet change and starve the pesky wee so n soās outLupus also has a butterfly rash but I was tested as itās in my family.Got the all clear there thankfully!
Think mine is just a combination of the two as I struggle with dairy now and I loved my Skyre.Time will tell!?
Itās embarrassing though when the suns up looks as if I have nappy rash oooops!
Hope you get things under control soon Josephineinamachine
Take care!
Hi jacobite33 Im sorry youāre having this too. Itās like the icing on the cake you never wanted to eat in the first place. Do you put at least 50 sun factor cream on your face? Need to do that otherwise it just gallops away with itself. Iāve ended up with nappyrash on my nose, forehead and chin before... great. The sun protection helps keep that at bay. Am looking at so many diets now have got myself confused.... SIBO...anti-inflammatory...low carb...Mediterranean... gah! All I really want to do is hide away, eat crisps and watch Harry Potter. My Hashis only recently diagnosed so still having ongoing med checks for levels. Someone further up mentioned T3 as a bit of a magic wand?
Ooft your asking a fine one there Joesephine.Best advice I can give you on T3 is to ask the other members,there very knowledgeable and helpful! When I heard T3 I thought it was RD-2Dās sidekick.Theres a thought I could consider growing hair on my face like big Wookie to hide the rosacea.Then again I would develop excessive underarm body odour sweating when the suns up knowing on my luck.Just canāt win! Got to look on the bright side of the road the say,true! Least when Iām crossing the road when itās Sunny the oncoming traffic I face think Iām traffic light red! Hey maybe young Harry could coincidentally put you on to a potion to help clear it,wands crossed!
R2-T3 - just made a new Star Wars character š¤£Ah - Iād grow a beard if I could but canāt even grow eyebrows at the moment! Take care
Thatās certainly what mine looked like
Like this
medicalnewstoday.com/articl...
Completely vanished once on high enough dose levothyroxine
Same with Raynaudās .....completely vanished
My fingers used to do this all the time
I suspect so.....I was tested for most things
Was extremely unwell
Ultrasound scan confirmed Hashimotoās. Was left on ludicrously low 75mcg dose levothyroxine
Tested for MS, Addisonās, Cushing, pheochromacytoma, MND, etc
MRI scan for Pituitary tumour.
Spent months going from specialist to specialist
Under care of thyroid specialist endocrinologist - with enormous difficulty, increasing levothyroxine incredibly slowly upwards.....eventually got up to 125mcg. TSH suppressed and high Ft4. Limped along (often literally) for next 25 years....until finally joined forum
Now completely recovered on high vitamin supplements, strictly gluten and soya free diet and addition of T3 prescribed alongside levothyroxine
ha ha ha Oooft Josephine I donāt fancy a beard either.The head and shoulders would only end up like one of those public statues covered in Doo re me fa so la ti Doo droppings when the pidgeons came to roost within it yuk!
You take care too girl and stay safe!
Still laughing away here your funny!
I suddenly got rosacea about six years ago. Appeared out of nowhere. No one was particularly helpful. I was finally given a fantastic cream on prescription. Itās called Finacea. It calmed my face down so much. After a year it went away. Rarely needed the cream. About 3 months ago it came back. My face has a burning sensation and gets flushed. Itās only since I went on t3. The redness comes and goes but the uncomfortable burning feeling is often here. I do also have a load of stress in my life so canāt work out which is causing it to flare again. But Iām concerned itās the t3 because it appeared as soon as I went on it.
I highly recommend the finacea cream. And immersing my face in a bowl of cold water helps loads. Xx
Cat I will take that advice and look in to it too thank you!Might try the cold water also but knowing on my silly sense of humour I would add fairy liquid to see if I could blow bubbles to pop at my ears and sooth the tinnitus
Hope yours clears again!
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